Wednesday, 19 February 2014

Animal Kingdom

Not quite sure what happened to my videos on the last blog - tried to sort it and have now given up!!

On the Sunday we went to Animal Kingdom. We trecked through Nepal where Martin and I went on an amazing roller coaster up Mount Everest and were attacked by a yeti!

We then travelled onto Africa, where we went on a jeep safari, we saw hippos, lions, giraffe, gorillas...

Joel was a wilderness explorer for the day and had to discover lots of clues and find out about many different animals in order to earn stickers. He really enjoyed this, especially as after watching too much 'Barney' he was really wanted to be a forest ranger.

Magic Kingdom

 Saturday was our day at Magic Kingdom. We were at the park by 8am after breakfast at the hotel - Mickey shaped waffles! Thomas also chose Fruit Loops - can this really be classed as food? Chemicals in a bowl I think.

We didn't manage to get birthday cake yesterday, so by mid morning it was time for a coffee and cake to celebrate. America has been one long eat-a-thon.

The highlights of the day were watching the street parade and a show about Mickey and his friends making dreams come true. Now, we've never really been into all the Disney characters and we weren't too sure what our Disney experience would be like, but it was actually a very poignant moment and suprisingly emotional as we listened to how everyone has a dream and how Mickey makes them come true. My dream was for Joel.


Knowing that we were here because of everyone's generosity made the whole weekend even more emotional as we would never have done this as a family if we weren't in this situation.

Joel danced along to the street party, doing his crazy dancing, in his own little world. Look out for him in the grey stripey jumper wiggling his tailfeathers along with Donald duck!Meanwhile Martin and I had all kinds of thoughts just whizzing through our heads. An emotional day, but a good one.


Monday, 17 February 2014

Disney for my birthday

After our stop at Panera Bread we carried on driving to Orlando. We are lucky that Joel's treatment is at an ungodly hour in the morning, as it meant three days at Disney instead of two. We arrived at the hotel then got the shuttle to Epcot first. We wanted to save Magic Kingdom for a full day on Saturday. Epcot is like a world tour, it has different areas to represent different countries. We wanted to go on the Norwegian Viking Ship ride and kept telling Joel that it was just a gentle boat. He was screaming and in tears saying that he didn't want to do it! He has a phobia of rides and even struggles on a carousel! We asked if it was scary and we were told no, so we persuaded Joel that he was being silly and bribed him to come on with us. It was scary! It was dark and eery and we felt bad for telling him that it would be ok. Later that night before sleeping he told us that he didn't like the rides that go up and down and round and round because he thinks that his tumour is going to fly around inside his head. He doesn't get the idea that it is attached and that it cannot move. It made us sad hearing him say that. We now understand why he doesn't like rides and decided that Disney would be about the shows and not the rides.
We strolled past all the different countries then took a boat to Hollywood. This was better for Joel. He got to see Buzz Lightyear, Stitch and Lightening Mcqueen.

Joel enjoyed the 'It's a Bug's Life' play area where everything was oversized making us seem tiny. He also loved the Speedway where both Joel and Thomas got to drive their own Hot Rod. Not a very clear picture but Thomas scared me to death as he swayed me back and forth as we kept hitting the metal guideline! Though actually looking at the picture he probably couldn't see much!


The background scenery for film sets was amazing, from a distance it looked like you were actually there!

Joel did really enjoy the shows, and it didn't matter that we weren't focused on the rides. We watched an Indiana Jones stunt show which showed how the stunts are filmed. There was lots of dramatic fighting scenes and a huge boulder ran over Mr Jones before he escaped in a stolen aeroplane! The day ended with a night time laser and fireworks show with Mickey.

When we got back to the hotel, the staff had covered my bed with balloons and party banners with a card from the reception. What an amazing day!

My birthday breakfast

Friday the 14th - Valentine's Day - My birthday!

This is the blog I wrote but didn't manage to publish ......

Oh my God I feel so fat! Panera Bread for a birthday breakfast - third time this week - that's not good is it?? Monday to celebrate Joel managing his first MRI scan without anaesthesia. Wednesday because we had time to kill between appointments and today Friday 14th because of my birthday. What has happened to our family's sugar free diet?? Must get back on track. See the enormous stack of boxes filled with sweet treats from Stel and Pete!

Friday, 7 February 2014

Reality hit

A little bit of a reality hit this morning. We don't really think too much about Joel's tumour - we go for treatment and then leave straight after. Block it out and carry on. But today, we stayed on a little bit longer as we got chatting to a couple of people we've become friends with. Everyone here has so much to deal with when you listen to their story, you feel quite lucky when you listen, and then it dawns on you, you realise that we too are one of them. We too have our own story.
A 9 year old girl with a tumour in her pituitary gland, 15 hour craniotomy to partially resect it, then here she is having proton after the remaining cells continued to grow. She has a life of hormone therapy ahead of her due to damage to the pituitary gland. Her mum struggles to get the level of meds right to control functions such as thirst and temperature regulation.
A 5 year old boy with a tumour in his brainstem, the area which controls the most basic functions such as breathing.. staying alive. 8 hour surgery to resolve hydrocephalus. Too high a risk to operate on the tumour itself. Chemotherapy not highly effective, so he's here having proton. That's our story. So he's doing well now, but dwell on it, dare to think about the future? What if we're the 30% it doesn't work for? What then? That's why we don't think about it. So forgive us if we post blogs about all the fun things that we are doing, but we are filling our days, blocking out the conversation we don't want to have. Burying some of the conversations we've had and the things we've been told, and holding onto others.

Our Journey..Strength..Courage..Hope

My next blog will be a fun one, I promise.

Wednesday, 5 February 2014

Awesome weekend

We have had the most amazing weekend thanks to everyone who helped raise money for Joel. We spent Saturday at Legoland and Sunday at Seaworld, Orlando.
It was fantastic. I was on the verge of tears by the end of the dolphin show at Seaworld. It meant so much to me just how much Joel enjoyed it. Seeing his little face get so excited. It would just light up. Never would our family have shared such an amazing time together if all of this hadn't happened to Joel. The fundraising that people have done for Joel has made this the best 'radiation vacation' we could ever have dreamt of. The boys have not had a 'holiday' like this before and are unlikely ever to again. It has been a once in a lifetime experience and Disney is yet to come!